As the founder of the National LGBT Cancer Network, I am used to people questioning my organization's reason for existence. These are some of the questions I am often asked:
"Why do we need an organization that specifically addresses the cancer needs of LGBT people?"
"Aren't our issues covered by the American Cancer Society or the Lance Armstrong Foundation?"
"Shouldn't our interest only be in finding a cure?"
"Isn't a lump just a lump, regardless of whose body it is in?"
My answer to all these questions is a firm "no" -- that is, it absolutely matters who that lump spent Valentine's Day with. Not only do LGBT people have higher cancer risks and lower screening rates, but our experience of cancer is partly determined by being members of a sexual and gender minority group.
When giving a presentation to a group of LGBT psychotherapists, I heard the following story, from a woman -- attractive, white, upper-middle-class, and well-insured -- who was recounting her experience with breast cancer 10 years ago. She said that she went to every medical appointment alone, afraid that if any of her providers knew she was a lesbian, it might have a negative impact on her care. Her life depended on those treatments and the good will of her oncology team. She may have shown up alone, but she was absolutely not single. Several months into her treatment, she and her partner exchanged vows and rings. Her doctor noticed the band at the very next appointment and congratulated her on her recent marriage. This woman awkwardly thanked him, too afraid to mention that her spouse was a woman. I respected her fear, even acknowledging that, by many measures, she has more privilege than most of the LGBT community, many of whom cannot afford access to decent medical treatment.
But beyond these anecdotal reports, I have little evidence for what I hear every day. There is little funding for cancer research on our community. Since no national cancer registries collect information on sexual orientation and gender identity, our numbers are even hard to gauge.
However, I am beginning to collect some data that confirms what I already know: that it is harder to survive cancer as an LGBT person. In one study, lesbians and bisexual women were two times more likely to report fair or poor health following a diagnosis. In another, gay men with prostate cancer were more likely to have trouble with urine, bowel, and sexual functioning than their heterosexual counterparts. They also reported feeling more depressed and more worried about a recurrence.
Why? We will need more research to know for certain, but when fear of discrimination prevents us from having our families of choice accompany us into treatment, we are left to go through a frightening and difficult experience without the necessary support systems. When we don't have great (or any) health insurance -- as is the case for a great many LGBT persons -- we may have little choice about who treats us. It is no wonder that we are more afraid, more depressed, and in poorer health following a diagnosis than our heterosexual sisters and brothers.
Discrimination in health care is decreasing, but it is still quite evident. One in five transgender people is actually turned away by a health care provider. A trans man I know with breast cancer was not even given the results of his biopsy. Instead, the oncologist called to refer him to psychiatry!
When medical offices discriminate against LGBT people, that climate affects LGBT medical providers, as well. In a recent study, one out of five LGBT nurses reported an unfriendly workplace, and of the remainder, many reported simply a "barely tolerant" workplace.
Even well-meaning doctors and nurses are poorly trained in how to welcome LGBT patients into health care. On average, a medical student receives just five hours of teaching on LGBT-related health content over the course of their four-year education. Once in practice, they find that current intake forms give them no clue about which patients are LGBT. If they don't know how to ask (and make it safe to answer), LGBT patients remain invisible.
We cannot be silent any longer. The National LGBT Cancer Network wants to be the voice of the cancer survivors in our community, but we need your stories. Tell us how you you have been treated, if your partners are welcome or not, and who your support team is.
The National LGBT Cancer Network is conducting our own survey in collaboration with a researcher from California State University San Bernadino. The short and totally confidential online survey will focus on the experience of LGBT people at the moment of a cancer diagnosis. If you know an LGBT person who has ever been diagnosed with cancer, please encourage him or her to participate. Spread the word. Speak up. We need every story in order to tell the world the truth about cancer in the LGBT community. Participate in the survey here.
Follow Liz Margolies, L.C.S.W. on Twitter: www.twitter.com/cancerlgbt